I caught up with Roland Chesters to talk about the book he’s written about being diagnosed with HIV — Ripples From The Edge Of Life.
Why was writing this book the right way to share your story?
It’s not only my story — the book contains the stories of 13 other people diagnosed with HIV, and in some cases AIDS, between 1982 and 2015. I’ve been asked by one of those contributors not to call these ‘stories’ as that usually implies a work of fiction. These are not. They are real life, warts and all.
The book also contains the voices of those who have been around me since my diagnosis. I couldn’t conceive of a better format to include all of those voices than in a book.
Did writing the book help you to work through the pain and trauma of the initial diagnosis and the aftermath?
The process was painful, requiring me to go back to experiences which were hugely painful at the time. But it has also been cathartic and empowering. I no longer have to hide from anyone or anything. It’s all in the public domain. It’s also enabled me to reflect on how far I’ve come since that diagnosis 2006.
When did you start to realise that there was life beyond your diagnosis? That the improving medication was changing our understanding of what a diagnosis meant?
I was told I had two weeks to live when I was given my diagnosis. I guess 15 days after that, I started to realise that I was going to live longer and what that potentially meant.
To be honest, I’d spent two years of thinking I was going mad because I’d seen so many specialists and consultants and had so many tests, but none of them could tell me why I was gradually losing the use of my arms and legs, speech and memory. So when I was eventually given a diagnosis my overwhelming feeling was one of a relief — I wasn’t going mad, I wasn’t imagining it or making it up. But my future was still very uncertain and that uncertainty had a major impact on my mental well-being.
Although I was aware that HIV/AIDS no longer needed to be a death sentence, I was concerned about what the quality of my life may be. I was determined that if my quality of life were not what I wanted it to be, then there would be no life for me.
The experience of someone being diagnosed today is quite different from your experience in 2006. Why is your story relevant to today’s readers?
Although the treatment of the condition has made amazing progress in the 35 years since HIV first appeared, the levels of stigma surrounding the condition — certainly here in the UK — remain pretty much unchanged.
One of the consistent themes that runs through the contributions of the 13 other people in the book is the impact that that stigma has on their mental health. While HIV+ people may be living longer, healthier lives, we still have to be very aware of who may have that information about us and what they will do with it. The reactions we may get from people once they know can still be unpredictable, unexpected and, to put it mildly, sometimes very unhelpful.
There’s been no government-driven public campaign of information regarding this disease since the tombstones and the icebergs of the mid 1980s, and that was a campaign of fear, not education. That’s what people still remember — the fear remains, driven by ignorance. Fear creates the stigma, and stigma is the killer.
I’ve facilitated workshops for Terrence Higgins Trust for newly diagnosed gay men, and the one thing that’s common to all of them when they turn up for the first session is fear. Fear of the unknown. Fear of how other people will deal with their diagnosis. Fear of the loss of the life they were expecting to have.
We also have to remember that we are now seeing people who have been living thanks to the medication for a number of years. But nobody really knows what the long-term impact of that medication on the body will be.
Having lived through some of the most traumatic years of the epidemic, how do you feel about the changing landscape of HIV?
It’s a cultural shift. Undetectable = Untransmittable, or U=U, has only been around a couple of years, compared to the 30+ years where the message that condomless sex equals ‘risky’ behaviour — it takes time for the message to start to take hold.
Too many people have seen the impact that HIV/AIDS has had on the people they knew and loved and the very slow initial response to the epidemic — to be able to automatically switch off those feelings.
What do you hope that people feel when reading the book?
To recognise that HIV/AIDS hasn’t gone away, that it continues to have an impact. The message of this book applies not only to being diagnosed with HIV/AIDS but with any kind of life-changing condition.
I came up with the title, Ripples from the Edge of Life, because it’s not only the person who receives that diagnosis that’s impacted, but also the people around them — the ripple effect. People who have been diagnosed often feel very isolated, marginalised, and living life right on the edge.
As your life has progressed, do you have further chapters to write in this story, or are you turning your writing attention to other subjects?
I’m not a writer. I didn’t write this book with the intention of being seen as a writer. This book is about my life. I only have one life. For me, there will be no other books. But there are certainly many many more narratives of people living with HIV/AIDS to be told and I hope somebody else will take up that baton. Otherwise, who will tell our stories when we’re gone?
We want to hear your opinion
“My first thought was — I’m dead.”
In 1985, Derek Canas underwent heart surgery to correct a congenital anomaly — he was three months old.
The surgery was a success, but 16 years later Derek was diagnosed with AIDS — he had acquired HIV as a result of a blood transfusion during the heart surgery.
Derek is now a DJ and a campaigner for HIV awareness. Derek shared his story with Mainly Male.
When you were first diagnosed, how much did you and your family know about HIV?
The only thing I knew at that time was a few memories of a Nick News episode years before. I was diagnosed in 2001. My first thought was — “I’m dead.”
Thankfully, I had a great doctor who told me that I would that I would be going to his funeral, that he wasn’t going to mine. I had an AIDS diagnosis and wasting syndrome — I was weeks away from death.
What sort of counselling and support was available to you when you first diagnosed?
Just at doctors’ appointments. I live in a small town, there were no support groups close by. Family and close friends became my support system.
Have you encountered any stigma or discrimination as a result of your status?
Yes — especially in the early days after diagnosis. It’s just part of living in a small town. The understanding of the virus is still stuck in the mindset of the early-90s. Sadly, that’s nationwide — public knowledge is really lacking in terms of HIV.
You speak publicly about HIV and educate people about the virus — do you ever feel like taking some time out? Do you ever feel like you don’t want to have to explain your status to people that you meet?
I don’t take time out for myself. My cardiologist hates that — I’m on my fifth pace-maker. I always welcome the opportunity to explain my HIV status. I wear it like a badge of honour. The virus nearly killed me, and I’ve fought back — I’m the one that’s kicking its ass now.
What advice or guidance would you give to someone who has been recently diagnosed with HIV?
The days after are rough — don’t be ashamed of the breakdown. You’ll feel better as your health gets better. It just takes time and patience.
Do you have any hints or tips for people on how to respond to HIV stigma or discrimination?
I use music to get me through. I’m a DJ, so I know how powerful music is on our minds and bodies. I always encourage people to find their music or movies — something that helps them laugh or get hyped-up.
Keep a calendar — put things on it, no matter how small — always look forward. Tomorrow can and will be better.
Everyone gets knocked down in life. It’s about how you stand back up.
Sharing the stories of our community
It’s not easy to talk about HIV, but talking about your experience can help to build your confidence and understanding of what HIV means for you. Your story can also help others who are processing their own experiences with HIV.
If you’d like to share your story with the readers of Mainly Male, please email [email protected]
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